Celiac Rant: I Have Been Feeding Poison to My Child for Years

We need to be our own best advocates. I’ve been saying that for years.

We simply cannot trust that the doctors word is final. Because far too often…it’s wrong. Especially when it comes to celiac disease.

If you have not already, check out the doctor horror stories. I suggest you do not read them on a full stomach.

And we need to be even stronger advocates for our kids. Many doctors will simply dismiss a child’s symptoms if they don’t fall within the “normal” range of celiac symptoms. Is this due to laziness? Arrogance? Lack of knowledge? Ummmm…yesx3.

A case in point comes from this exasperated mom whose doctor’s simple refusal to listen to her could have had disastrous consequences.

Exasperated mom…the Dude’s floor is all yours.

—————————————————————————–

Grrr. Another doctor Rant.

I was DX 5.5 years ago while pregnant with child #2. I had none of the “typical” symptoms – I was severely Anemic, (my hemoglobin was in the 70s) and my voice was gone from acid reflux. My GP did a tTg and it was 182. Boom, no more gluten for me – no biopsy due to the fact that I was pregnant.

I have 3 children. Each year at their medicals, I have asked the Dr. for the blood test “to be safe”. Each year the Dr says that they have none of the symptoms and there is no reason to be concerned.

My oldest has had some problems over the years – he refused to go to the bathroom for a bowel movement so it would back up and force it’s way out. The he would have painful bowel movements. He is a very emotional child. He cries a lot. He just doesn’t “fit in” with his classmates. And, he can not sit still or pay attention to anyone for long.

Although none of those are typical symptoms, I have seen each one in different ways listed as a sign. So, this year I asked for the genetic test to be aware if they were carriers. It turns out that in Canada, those tests are not available . So, he did finally agree to do the tTg.

My son’s tTg level is 3500! Yes, Three Thousand Five Hundred. And a positive is 10. So, I have been feeding poison to my son for years.

The Dr. also gave us a RX for something else that he should take for 6 months or more. I went to fill it and asked if it was GF, the company cannot guarantee if it is or isn’t. Now the Dr says to see if the GI will think it’s ok.

Um, no. There is NO gluten allowed in GF diets. He will be GF 100%.

When will the Drs. learn that kids DO NOT need a “starvation” belly to be celiac!

21 Comments

Amanda

Where are you in Canada? The gene test is available. We had it for my daughter as she was already on a GF diet. It was performed through the IWK hospital in Halifax. Some doctors just won’t listen and some were trained when celiac was still thought of as a rare disease which we know it is not. I feel your frustration – too may times, things are labelled as psychological when there is a physiological cause.

I know in Ontario it is available but not covered by OHIP and doctor’s don’t always offer it or want to to give you a req for it. They don’t even seem to want to offer the tTg (which also isn’t covered). Unfortunately they seem to think that if OHIP doesn’t cover it you don’t need it/want it. *sigh*

I’m in Ontario and my family Doctor said the only way that I could have my son gene tested is to take him to Sick Kids Hospital in Toronto. BUT, they won’t do it unless he is already a patient there. That makes sense right? Talk about a no win situation.

So we are basically left choosing an outside testing facility to have this done. I would suggest GlutenPro. They are based out of Mississauga, Ontario are very reputable and surprisingly affordable for a non covered medical test. Its just a simple swab sample and it’s not affected by the GF diet.http://glutenpro.com/genesure.html

Thanks good to know! My daughter’s tTg came back negative but she’s been on a GF diet for over a year so it could be a false neg. She’s going to see a pediatric gastro at our local children’s hospital, but i will keep this in mind. I have another child with celiac symptoms as well, would be interested in getting all four gene tested if/when we can afford it.

I agree about being backwards here. It should be all about preventative maintenance seeing as untreated Celiac disease is much more costly than a darn test. There’s a politician from Thunderbay who is fighting to have the blood test covered by OHIP. Bill Mauro is his name.

Patti

I’m so sorry your family had this experience. My daughter’s pediatrician at least did the blood test when I requested it, but when two of the numbers came back positive, she didn’t know what to make of it so she called a pediatric endocrinologist (?!) and together they decided that the near constant diarrhea my daughter was having is what caused the out- of- range numbers so she would need to wait 2 months for that to clear up and then be retested – regrettably I went along with this plan.

I remember when I first went to an otherwise-fabulous internist and announced that if I did not eat bread, I did not get sick. (Sick by that point could involve projectile vomiting, daily, and weighing eighty pounds less than I currently do) This was back in 1999, when they were just starting to discover that celiac is 1 in 133 people in the U.S.

He said, “But celiac is really rare. It’s one in one thousand people.”

thetxlady

I had something like this. Colonoscopy in 97 due to doubled over screaming gut pain. Doc said “villi were laying down & we know that isn’t normal but we don’t know what to do about it yet”. Well great how about I distroy my body another 10 years while I find a doc that does know what to do about it! GGGRRRR

Brenda

I do not understand WHY celiacs/gluten intolerance people have ANY gluten in their homes. My home has none – I was never tested, however, I know I am intolerant because I pulled myself off, over 2 years ago, and refuse to go back on for the test!!! And why would I fight with a doctor who knows nothing about my issues! 10 years of sever IBS, no doctor solved those issues except offer me more Rx – I really do not understand why testing is necessary if I feel fabulous without it.

My youngest son will eat NO gluten, my two older sons, occasionally, but it does not bother them when they eat small amounts. My husband eats very little, but has had noticeable improvements with sleep, chicken skin (back of upper arm) gone, allergy improvements- that he refuses to eat much if any at all. With the change in wheat I cannot imagine anyone eating anything with gluten/wheat in this day and age. It is like poison!

Heather U.

I am very sorry you had to experience this! I know it can be very difficult to get a doctor to test for Celiac…and I have no idea why because it is not that costly or difficult. I know it took about 15 years for my Celiac diagnosis (or even to get tested for it!). I know recently I had an older patient who was the absolute picture of Celiac disease and still the doctor was not testing her for it. I literally had to get up in the doctor’s face and give him a little “education” on Celiac and the need for immediate testing. Sure enough, that doctor finally listened and ordered the blood tests….guess what? Positive. I really believe people need more education…especially ALL health care providers, including dietary aides and nurses. I am working towards having an in-service at my hospital about Celiac and the gluten-free diet as well as having a special prep area in the kitchen and having a list of gluten-free foods/snacks in all of our nutrition rooms. One step at a time! So glad your child is now on the gluten-free diet and (hopefully) feeling much better! Good for you for being so persistent.

K. Cooper

THREE doctors refused to test my son. All I heard was: he’s charting fine (he was skin and bones) and this is normal in preschoolers. My favorite answer was that his mood swings and bouts of depression (at age four) were just his “sinful” nature and I needed to punish the behavior.

The one doctor who would test, would only test for allergies as it was, “obvious your son is suffering from some type of airborne allergen.” 100 prick tests later everything came back negative – this from the doctor who puts no stock in blood tests.

Due to that fiasco and my utter exasperation with doctors, I decided I didn’t need a test – we went gluten free and after following the diet for 3 days we had a new child – my son, who would eat hardly anything that wasn’t pizza, grilled cheese or pasta (we crave what we cannot have), has developed an AMAZING palate. Now that his stomach doesn’t hurt anymore, he’s discovered that he loves spicy things (something this Cajun mamma can appreciate). He throws Tabasco on most of his food and loves sausages of all kinds (GF of course). He’s willing to try the crazy things I put on his plate and is a much, much happier person. He also gained 10 lbs and grew 3 inches in the first 6 months after we took him off Gluten.

Rachael

Keep up the good fight, Exasperated Mom! We had a similar experience. Our two daughters have been sick since birth but were never under weight and met all of their developmental benchmarks. I went to specialist after specialist and it took me 12 years but I finally begged for a Celiac panel and our pediatrician refused so I sent my husband the next day and then it was done. Sure enough both of our girls tested at the lab max on ttg/iga. The guilt and anger and bitterness that I experienced could have eaten me alive. I wanted to send a letter to each and every doctor my girls had seen over the years. My anger is subsiding only because I’m channeling it elsewhere but I still have this insatiable need to educate doctors! We didn’t have any of the typical gastrointestinal symptoms so we were never referred to a gastroenterologist. One of the pediatricians in our practice went off on me over the phone when I called after hours to get a prescription that is gluten free. Her response, “It’s only a little bit, so just give it to her. I didn’t even know there was gluten in medicine.” I shouldn’t be surprised anymore but I am time after time. Be proud of yourself for fighting and getting to an answer!!! I sincerely hope and pray that in my children’s lifetime, they will be able to look back at the years that they suffered and know for certain that no other kids will have to endure that path.

Claudette

This just goes along with the rest of the “auto-immune disorders are all in your head” bull***t that the medical community has been trying to pass off for years. But if it makes you feel any better, this doesn’t happen with just celiac and auto-immune disorders. I had to fight with my doctors to be taken seriously about breast cancer when I had a palpable mass in my breast – I insisted on an ultrasound when the mammogram came back negative and I basically had to strip to my waist and physically force the radiologist to feel me up (sorry for the PG-13-picture here). By the way, the cancer tumor was the size of an Easter jellybean. And I am one of the best cancer centers in the world.

it all just goes to show you… the only way to be a good patient is to be a bad patient…

Jane

That is an awful doctor experience! I can’t imagine the relief you felt (amongst other things!) when you finally got the correct diagnosis.

Your story has reminded me of my own experience with my doctor when I was diagnosed with coeliac disease about a month ago – except mine was a positive experience. I have two toddlers and the doctor was explaining that there is a chance that they could have it too. I asked if I should test them now and he said he would hesitate until they show any symptoms (both are healthy, happy, good eaters/growers/pooers etc), but if they happen to be doing less than well in school (when they get to that age) and I suspect ADHD, I should bring them in right away to be tested for coeliac. I was super impressed with his knowledge and I suppose his seriousness about the disease. The first doctor I saw (at the same practice) who told me my serology was positive, said “you should try eating gluten free and see if you feel any better”. I’m glad I was a bit overwhelmed with that response and went to see the other doctor.

Shawna

Hi GD,
I just wanted to update you on this.
We went to the Gastro Dr who tried to convince us that we should put him in a “study” instead of the endoscopy. I did not agree to this – I want him to have 100% certainty that he CAN NOT have gluten EVER, and the only 100% proof is the scope. So, we had to wait until end of Oct, but he did get it.
The scope is of course positive. And, it turns out he has esophagitis as well (wouldn’t have known without the scope). He has been gluten free since then (only 2-3 weeks now) and already he has more color in his skin and no bags under his eyes. He met with a dietician who explained on his level, so he can understand what he can’t eat and why. He is accepting it.
The final step of this experience is tomorrow. We will meet with our new pediatrician for the first time.
So, after the long fight, things are looking positive, and most importantly he will be healthy.

Wow! I never was able to convince the Dr to test my kids. My mom has it, I have it, and they both had ‘random strange problems’ that had no ‘reason’. But, both didn’t qualify as failure to thrive, although my son went from 40th% to ‘under 5th%’ by age 4 and my daughter went from 90th% to 40th% by age 3; my son had the belly, and seizures, and my daughter had severe fatigue, constantly sick, and night terrors (and more for both). After just moving them GF, the Dr said “I guess I should have tested them, sorry… You’re not willing to have them eat gluten for a while again are you?” In which I replied “**** NO”. So now, we KNOW they have Celiac, Dr knows it, but will NOT write it down as a diagnosis, he’s afraid he’ll get in trouble.
Sad sad things are Dr’s these days.

Who is Gluten Dude??

Somebody who's been gluten-free since 2007 due to a diagnosis of Celiac disease, where the doc said my numbers were "off the charts". Someone who can steer you in the right direction when it comes to going gluten-free. And someone who will always give you the naked truth about going gluten free.

I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.